Where I’ve Been This Summer.

My symptoms first started in June. For a couple of nights in a row, when laid down to go to sleep, I had chest pain, pressure that felt like my lungs were collapsing, and a lot of trouble breathing. Naturally, these symptoms also kept me from sleeping well. I first went to the Doc in the Box, who told me I might be dying but he couldn’t do anything about it because it was Sunday, after all. I foolishly returned to that same DitB three days later, but saw a different doctor, who diagnosed me with asthma, based solely on the fact that I couldn’t breathe as hard as I should be able to.

Like a good little patient, I got an inhaler and began using it. Not so helpful.

A couple of days later, my original symptoms had gotten worse, and added to them were two instances of blacking out, not really a great hobby to frequent when home alone with two children who are small and/or self-absorbed enough to be completely disinterested in the fact that their mother went from standing to crumpled.

A few days later, I was able to get an appointment with a specialist at a very highly regarded clinic here in town. Over several long weeks, they tested me for pulmonary problems and heart failure, along with a variety of blood tests, but everything came back normal except for a jumpy and at times abnormally high pulse.

During that time period, I had good days and bad. I had a minor wreck, most likely caused by the growing disorientation that I was experiencing. I added to my symptoms panic attacks (but only in my sleep, creatively enough), and had a couple of hallucinations, where things that weren’t moving all of a sudden were. There was a lot of head pressure and pain, and my difficulty breathing and lightheadedness grew worse.

But the worst part was my rapidly decreasing ability to process life. Chris would mention a friend’s name and I would have zero idea who he was talking about. Writing became excruciatingly painful, and my creative spigot slowed to a trickle. I couldn’t make myself do fun things with the kids, because I didn’t have the energy or the ability to interact in chaotic situations.

Thankfully, one of my best friends suggested that I look into Dysautonomia – her sister-in-law had it, and my symptoms sounded identical. I reluctantly Googled my health (something I had desperately been trying to avoid), and was shocked. It explained every single different thing I was feeling, including even the eye problems and anxiety I had struggled with at the beginning of the summer.

Everything.

A week later, another friend mentioned her own Dysautonomia on Facebook. So I messaged and quizzed her relentlessly about her symptoms. Again, identical.

From what I gathered, Dysautonomia is a nervous system disorder (and therefore can affect many systems at once as I was experiencing), and one of its main physical markers is the inability of the heart to react to changes in gravity (laying, sitting, standing), made apparent by low blood pressure and high pulse upon change. So I bought a blood pressure cuff and began tracking for myself.

On the days when I didn’t feel good, my blood pressure would be super low (90/50), and on the days where I felt fine, it would be normal (110/70).

I started tracking this a week before my next appointment and reported the findings to my doctors. Autonomic issues had also been on their possibility list, so they gave me a simple test: lay down, take my blood pressure, stay laying down for five minutes, then stand up, immediately taking my blood pressure again. I had an “autonomic response,” meaning that my body did not adapt, and my pulse increased to try to keep my blood flowing.

For the next couple of mornings, I tested myself when I woke up. I’d take my blood pressure while laying down, then again when I stood up (slowly, so I didn’t black out.) My resting pulse was already high (70+), but it would still nearly double every time (120-135) just from standing up.

All of the head pressure and constantly feeling faint made so much more sense.

My doctors currently have me in the testing process to determine if another disease is causing my autonomic issues, or if it is Dysautonomia itself.

I haven’t started deeply researching Dysautonomia yet, but that’s next on my list. I’m equally surprised by how many women that I know have Dysautonomia and how many people have never heard of it. But what I do know is that Dysautonomia can be completely livable or crippling – there’s no way to tell, and there’s no cure. If it’s bad enough, there are heavy medications to try and help make the symptoms better, but my body responds very poorly to almost all prescription medications, so I will be avoiding that if possible.

There are, thankfully, a lot of lifestyle changes that can really help: lessening caffeine, cutting out artificial sugars, drinking ridiculous amounts of water, giving up things that make you lose salt and water (such as carbonated drinks), and getting a lot of rest. I’m doing all of these, and also quickly realizing and avoiding the triggers that make my cognitive symptoms worse.

I’m still having days where I feel normal and days that I can barely function, and mostly days that fall in between those two extremes. On the bad days, drinking even more water and taking Sudafed (to raise my blood pressure) helps sometimes. But on most days, it’s taking me twice as long to accomplish things (especially writing and all that goes with it.) Additionally, Ali and I will be starting school next week, and I am praying that I have the energy and presence of mind to teach her diligently.

I’m in a very uncertain stage as to what this all means. I hope and pray that in a few months, I can say that I’ve figured out what works for me and that my symptoms are completely under control. But until then, I might move at a slightly slower pace than usual.

I pray for you and your doctors to find the right diagnosis and treatment. Isn’t it weird but my first thought on reading this was: “oh my gosh, that’s what Greg Wiggle had!” You know, Greg the guy in the yellow shirt in that kiddie group. They were all the rage when I had toddlers circa 2002-05 and we watched them in an endless loop. He left the tour at one pint due to his symptoms. Sure enough I googled it and it’s the same disorder. Thought you might find that interesting. Take care of yourself!!

Rachel, I understand the fear and anxiety that goes along with numerous symptoms, varied tests from seemingly unconcerned doctors, and a change of lifestyle. 15 years ago this past Spring, I was diagnosed with MS after a myriad of symptoms and horrible tests. A lot of your symptoms sound very similar to mine and all the steps that you have taken are the same that I had to take. At the time, my doctors knew nothing about the disease as far as the ‘living with it’ portion went. All of the things that I changed about my diet and lifestyle were trial and error until I found what worked for me.
Although I only ‘know’ you from your blog, I can tell you that you already have everything you need to face whatever it is that you have; grace, pluckiness, and humor; the latter being the most important.
Stay strong.

Oh Rachel, I am so glad you finally let us know all of this. Will certainly keep this situation in my prayers. You have a great positive attitude and I am sure that is going to help you along this journey. Looking forward to hearing more updates from this and praying for strength for you as you make the necessary life changes.

I’m so sorry that you are going through all of this. I am really glad someone was able to show you what you might have though, I know that helped a ton for us when I was told all of my baby’s symptoms in his new little life sounded like silent acid reflux and we were able to get medicine and man was that a great change! I hope the doctors are able to figure out a good diagnosis for you and that your body will react positively to whatever they prescribe. I would also highly recommend alternative medicine. Glad you are already learning some alternative ways of helping yourself. I love your blog and I hope your creative juices will continue to flow for you! But more importantly I hope your health and home life are improved.

Rachel, I’m so sorry you’re in such a difficult season. 2 of my closest friends, who are sisters, have disautonomia. Apparently it is genetic. Their symptoms were both all over “the map” and it was difficult to diagnose. One of them thought they had a heart murmur and had to wear a heart monitor for a while….very scary. I’ll be praying for you & Chris & the kids. Let me know if you need anything! I’d be happy to bring y’all dinner sometime or take the kids to the park to play {Anderson would LOVE it} so you could rest.

Oh sweetie, I’m so sorry you’re having to go through this :( I myself am in a similar boat, and have recently been diagnosed with a neurological genetic disorder that will leave me in a wheelchair in ten (or fewer) years, with no cure as well. I can understand the roller coaster of emotions that goes on it finding a diagnosis and then coming to grasp with the day to day reality.

You are in my prayers, and if you ever need to vent or a (cyber) internet to cry on, I’m here for you.

I hope you know my prayers have been with you since this started. Prayers that the doctors can find something to help and not harm you, prayers as you change life habits, prayers as school starts and prayers that God will put a healing hand on you and this might disappear.

Putting on that brave face day after day is tough. Allow time for breaks and a nap. I am amazed at what an afternoon nap can do to regroup and energize you. Having my own medical problems I know that life has days that totally suck. But it is your attitude that makes the day. I get so angry on my bad days. Angry at my body for failing yet again. But after hearing my kids worrying about me I had to really turn myself around and change my attitude so I wouldn’t take it out on them. It is tough. I wish you the best! Sending a smile and a bunch of prayers your way.

Thank you so much! Yes, definitely getting to the point where we all agreed to the direction that we needed to go was a relief. Because whether or not it had a name, I knew something was wrong, so giving it a name was a helpful step in the right direction.

Wow, Rachel! I’m so sorry to hear of your struggles. Things like that never seem to happen at a good time, but I’m praying God will give you the grace, strength, creativity, and whatever else you need to do all that you need to do as a homeschool mom!

Ooh, poor you! That sounds pretty stressful and scary! I’m glad you’re heading towards some ideas of what it could be and some treatments. Good for you for not being brushed off by doctors not wanting to put effort into finding out what’s actually wrong with you.

Just popped a quick prayer that you’ll be okay.

I had CFS/ ME for a few years (was bedridden for a couple of years from 16 to 18) then slowly got better for a couple of years. Unexplained and vague symptoms suck! As do things without clear treatment. I tried all SORTS of things.

Anyway, God bless you and give you as much peace as possible. Do make sure you lean on family, friends, church as needed instead of trying to do it all and carry on as usual. Come up with a plan b if you’re not well enough to homeschool, for example. I’m sure there are heaps of people who love you and want to help.

Praying for answers and wisdom for those (silly but getting increasingly less so) doctors, and patience for you as you go through those (sometimes downright nasty) medical tests. Also praying for answers. Stay strong!

Keeping you in my prayers! I had some weird stuff going on with my heart last summer at about this time (very strong palpitations like my heart was literally going to beat out of my chest, couple of passing out episodes, some chest pain, etc) so I definitely sympathize with the barrage of tests and not knowing what’s going on. I never got an answer, but made some lifestyle changes that mostly cleared up the symptoms by fall. Then this summer I went and got knocked up (on purpose) and now my body is doing all sorts of weird crap again. Having no reason for strange, scary symptoms is way worse though!

Wow, what an overwhelming bunch of stuff! I will certainly put you in my prayers. I am amazed at how gracefully you are handling all of this, you are an inspiration . Being a teacher while experiencing times like you are facing sounds really tough. But you seems to be able to handle so much so wonderfully, I wouldn’t put it past you for a second. I know I only know you from reading your blog, but come on, you have been dealing with all of this and you continue to blog, enough said! You are impressive.
Again, prayers will be said,
Julie

Rachel, thanks so much for sharing with us now that you have a diagnosis. You’ve been in my thoughts and prayers since you began posting the photos and stories of doctors’ visits.You are lucky to live near family who can help and a fairly self-directed Ali. Does she know what to do if you do pass out? Can she call Chris?

What a terrifying time! Prayers that you will find the right solutions to help you manage your symptoms and get you back on your feet (without dizzyness!) On a lighter note: is it Football Season yet?! I need to see some Alabama sorority girls wearing Uggs and shorts with houndstooth!! =)